Changed My Mind

Blogging is something I’m new at and even though I’m not all that good at I have a definite look at blog’s and people who do blogs. For me it was a way for me to vent, a way that I could just get my feelings out about being someone dealing with a chronic illness.

With me and this blogging we did for my English I have grown to sort of like to do it, I would have to say it has been good for me to just get what I’m dealing with and being sick out on paper or for this case in a blog. I talked about how it changed my daily life, the different surgery’s I have had and the side effects and ups and downs that came with every part of this. Usually I would have been the one who complains to my parents about hating being sick and saying “why can’t I just be normal”. This has been a good thing for my mom I would have to say because I wasn’t complaining to her, I had the internet to complain and vent to and anyone that wanted to read.

Blogs can affect the lives of many people for me it did at least. Blogs do many things they give people a way to vent, a way to share what they are going through. It is way to give information about things that most people probably haven’t herd of or know much about. That was what I going for in my blogs; I wanted to give people more information about my chronic illness “juvenile polyposis disorder”. Blogs however sometimes don’t give the full story, they give only what they want, where as in my case I could have only told the bad stuff to try to get people to feel sorry for me, but that’s not what I wanted to do I wanted you to see the whole the picture.

Blogs can be used for anyone and everyone that just wants to give them a try. In my experience I know I didn’t really know anything about what blogs were and really didn’t care about them. However it was our assignment to create a blog and ever since the first one I feel as if I was addicted, I might not have been so quick at doing blog posts on a regular basis, but I got them in and used them as a way to vent as I said before.

I agree with Rushkoff in “The Interent” We’ve Got Blog. I get the vibe from the story he wrote that blogs show what and or how to look at things and it also shows things from another perspective. There is a part in his story that I agree with and that is where is talks about baseball cards were a way to have communication between people(117). It is the same with blogs in this time today that blogs give people a way to communicate on something they share an interest in or are dealing with in my case.

Blogs have changed the way I look at things and have made me realize that there are a lot of other people dealing with what I am, and has also given a way for people to communitcate in many different ways and has made me want to keep up with this blog posting.

Rushkoff, Douglas.
"The Internet is NotKilling 0ff Conversation but Actively encouraging It "

MA: PersEus Pub 2002. 116-118

Just a Pep Talk

When you’re diagnosed with a disease you should or will get prepped on what to expect and deal with, also just in general you’re going to have, to have a pep talk every now and then don’t you think? This blog I found is, very similar to my blog posts but yet also different. In “A Chronic Dose by Laurie Edwards is focusing on chronic illness, health care and writing in her blog post “Just Make It Work”.

The blog I followed is more or less for people who have a condition that I have or along those lines. In this blog Edwards also talks to several people about how they deal with there condition and also how it affects there daily life and routine. There is one specific sentence in where I feel as if it just sums up what this blog is about she says “It’s amazing what you can do when you have no choice.” That sentence to me is what I consider the thesis

There a lot of things I got out of this blog some things I agree with and others I do not. In this blog Edwards talks to some people about how they dealt or how they are dealing with a chronic illness right now. One big part that I feel is a very good point in this blog is Edwards interviewed a lady named Vicki with cystic fibrosis. Vicki said one thing that to me stuck out she says that people commend her on how strong she is and what she is going through, however she says its not that she chooses to but she has to, something healthy people do not always consider. In my opinion this is meaning that she did not choose to get sick nor choose to have to live with it but has to, she has to be strong for herself to push her self to get through it. Briefly speaking and giving a short explanation on what this essay is I would say it’s just dealing with it. Edwards talks to people about what they are going through how hard it is and how they do it. Believe it or not I am sure if you read this blog you will learn some things you did not know about or really even consider. With me being sick and having to deal with it everyday it’s a big deal to me that people learn and read or talk to someone who is dealing with a chronic illness and that is exactly what Edwards does in this blog post. There are many things in this blog that I can completely relate to and others that I just want to say “WHAT”? Me being a person going through a similar situation as those in Edwards blog some people had opinions that I had never really considered.

Edwards correctly notes how difficult it is to live a chronic illness by stating that “Chronic illness complicates the daily negotiations and moments where we just need to make it work that we all face.” I really like and agree with this statement because it is how I feel sometimes, I just want to give up and say I quit but really I can’t because to me I’m letting myself down. Having a chronic illness can complicate daily life in so many ways, for me it starts with having to remember my medicine every morning, I have to take around four pills every morning and every night before I go to bed it gets really annoying very fast, especially if I want to go stay with friends or go stay with my sisters I have to remember to take my medicine with me and I have to remember to actually take it because I don’t have my mom right there reminding me granted she usually will send me a text or something reminding me but I still don’t always remember.

There is one part in this blog I do not agree with and that is where she says that she had talked a lot about cancer mythology and says “the idea that having cancer makes you stronger, or more spiritual” because in my opinion sometimes people don’t always feel like they have gotten stronger they fell as if they have just gone down hill and there is nothing to look up to anymore because they think this is the end. Yes I agree that people should always look at the glass half full instead of half empty.

However sometimes when you are dealing with a sickness like this, you don’t think about looking at it half full you think this is the end you might as well give up, honestly with me being in the hospital several times I have just wanted to say “stop I don’t want to be sick I don’t want to go through this anymore”. I know that some people out there have felt the same that is why with that saying I disagree because people don’t always think they are stronger now that they are sick, however yes in some cases once your told you are sick it makes you realize that there are several things that you still want to do It makes you want to push yourself therefore you think you are getting stronger.

Edwards does a really good job in my opinion talking about chronic illness and talking with other people about it (there are some supprt groups out there that deal with chronic illness's you can go to and talk about as you see in my link). She makes some really good points and I feel as if it is really informative especially for people that don’t always know exactly what to think about it. She says its amazing what you can do when you have no choice which in my opinion I’m sure everyone can relate to that at some point in there life. At the end of the post Edwards writes “In the end, maybe this circuitous post is really nothing more than a pep talk”. I like how she puts this in because depending on how or who reads this it could be a pep talk for you, it could be a pep talk for someone who is feeling down about being sick or just a pep talk for someone being overwhelmed with the pain and all the stress from the medications and wondering will I ever get better.

Determination

I have learned from struggle with juvenile polyposis disorder that my life is not always easy, but worth living. I hope this blog can catch your attention and make you somehow understand what it’s like to be sick and how to deal with it.

All of it started back in 2006 when I was having excruciating stomach pains it felt like sharp pains almost like someone stabbing me with a sharp knife right around the lower part of my stomach, which most doctors call the lower right quadrant. The pain was to the point where I was curled up in a ball most of the time, and if I tried to walk the pain hurt so bad that I was just right back down in a ball. It was at that point that my mom decided to take me to the hospital and they admitted me and did a lot of tests.

They did an MRI, which is where I lay in this big machine similar to a C.A.T scan or x ray, but without radiation and includes more detail with the pictures. They also did an ultra sound which I’m sure most people should or have at least one time in their life heard about it however an ultra sound is just a machine using high frequency waves maps a detailed image of what’s inside a persons stomach. Also the doctors did a C.A.T scan, which is like an x- ray however you sometimes have to drink gross stuff which is a special fluid which helps outline the lining of your stomach, or you can have the fluid pumped into you through an IV. It basically lights up your insides and you go through this big circular dome and it takes pictures using radiation. Lastly they did blood work that is just basically like a shot and they pull blood out.

After all these tests, I felt as if nothing was getting resolved on why I was having this pain. Eventually the doctors got my pain under control but that was with help of the medicine. At the end of that hospital visit in October of 2006, nothing really got resolved, the doctors told me part of my pain was caused by I.B.S (Irritable bowel syndrome). After they got my pain resolved they sent me home with medicine and a follow up appointment with my doctor. So after that I kind of just went with it and figured it was what they said IBS.

I went through ups and downs through out the next year of having the pain come and go but nothing bad enough to put me in the hospital. Since I was still getting the pain every now and then the doctors decided to do what the call an endoscopy, which is where they put you to sleep and stick a camera and what I compare the biopsy collecter, to the things in an arcade where your trying to win a stuffed animal like those claw things which of course are smaller. But they stuck that and a camera tube down my throat. When they did that the doctors pulled out a few polyps but were very small and then sent them off to get a biopsy and they came back benign which means, the way I understand it the cancer cells that were pretty much dead.

It was in 2008 when I realized the pain was back and it was ten times worse. Once again I was taken to the hospital and yet again admitted. The doctors came in and talked to me and told me that after looking at my test results which were the same tests I took back in 2006, an MRI, C.A.T scan, ultra sound and blood work. This time the tests did not come back normal. This time the ultra sound was showing some inflammation, and blood work came back and was told I was anemic. Also with the medicine not controlling my pain the doctors decided to do another endoscopy and also a colonoscopy which I am sure everyone knows what that is, which is kind of embarrassing, however it’s what they have to do to try to figure out my problem. So once they did the necessary procedures they found more polyps and sent them out for biopsies again. The doctor’s main concern was why my body is producing these so fast. Once they got the biopsies back they told me that one of the polyps they had removed came out in fragments and was not benign they were very concerned with this so put me on medicine to try to stop the cancer cells from spreading. I was sent home and just pretty much lived on medicine every morning and night had to take like three pills was not fun at all.

In 2009 the pain was back, yet again the doctors did surgery and realized the cancer cells had spread and started producing more polyps on my colon and stomach. Since then I have been in and out of the hospital having the same procedures and being on the same medicine. It’s not fun having to deal with something like this and knowing that it is spreading through my body and half the time not knowing what’s going to happen.

Since these procedures I have learned that I need to just take one day at a time and deal with what comes my way. I know it could be worse but sometimes I feel like its only going to get worse but that’s just a wait and see I guess. With what has happened had made me really live by the quote take one day at a time step by step.

Good News!!

Well judging by the title of my post I’m sure you can guess what this blog is going to be about. FINALLY I have received some good news, its not the cure to my problem but I will take what I can get, I had recently been to the doctors for what I consider a check up and also to schedule when they are going to do my endoscopy again, during that visit I had received some news that made my day.

Last week I went to the doctors thinking it was just any other visit, thinking he’s just going to ask me how I’m feeling, how the medicine is working and to try to schedule another surgery well this time that wasn’t the case. He started out the normal routine blood pressure which I hate because it squeezes your arm so tight and gives me this tingly feeling like when your foot falls asleep so like I was saying It started out with normal visit blood pressure, pain on a scale of 1-10 and so on.

After all the normal stuff the doctor came in and I just had this feeling maybe something good would come out of this visit. Well it did my doctor started talking to me telling me that hes taking me off some of the medicine that I am which means now I only have to take one pill twice a day now and that is because he said after some of the tests and surgery’s he has decided to put me on this new medication that should help the pain a lot not necessarily get rid of the pain but will take the level down to possibly like 2. Yes its not the news someone would have wanted but I will take it, not having to take 3 or 4 pills a day now only one is a lot better to me, also with this medicine and the surgery they are hoping to finally come to a conclusion of that this could be but I can only hope and see.

What to Eat...What Not to Eat

Believe it or not I am supposed to be on a very strict diet of what foods I can eat and what I shouldn’t. Granted I do not always listen to what I should and shouldn’t eat but I think I should because like the doctors have told me some foods and drinks can make me be in more pain than before I had even eaten anything yet.

Some of the foods I shouldn’t be eating are along the lines of spicy or greasy such as pizza and yes I do eat pizza I’m not someone that doesn’t like it however a lot of times I have to take a napkin or something like that and pat it on the pizza to get the grease off it sounds gross but its something I have to do in order to not have a lot of grease in my system. Another food I should be eating is spicy things like for instance at buffalo wild wings I cant get the spicy or hot wings. They are really good when I first get them and after I have eaten them but after that it starts to make me sick. For some reason that I still don’t really get even though the doctors have explained it to me it causes my pain to come and sometimes gets really bad. So therefore I can have spicy or greasy foods which sometimes I do not always listen to that and do eat those things and deal with the consequences when it comes.

I also shouldn’t be drinking certain pops such as pepsi or coke or mt.dew which I’m sure most of you know I don’t listen to that rule really either because I like mt.dew but because it has caffeine in it, it also messes with my stomach and causes me to get really bad stomach pain so therefore I have had to lay off on the pop which I know pop is definitely not good for me which I'm glad I have been told to lay off it. So I guess what I have been saying in this blog is being sick affects more than what you think it affects when you go out with your friends to eat or when you just really want that pop that you cant have and like everyone does I break the rules of what I should and shouldn’t eat. And yes it sucks having to be a strict diet, think if you could only eat certain things or drink certain things it would suck don’t you think.

Stress on top of it All

Stress can over take someone’s life, well with me it’s very easy to get stressed out dealing with school and work and being sick all the time of course I’m going to get stressed out. Getting stressed can defiantly affect my health, sometimes its like im just sick again. There are a lot of things that stress me out and believe it or not I get stressed very easily.

School, work, and just being sick in general can stress someone like me out. When someone dealing with what I have gets stressed it’s like a war path so just stay out of my way. Having to remember to take medicine gets very annoying and can stress me out having to take it every morning and night. Gets very annoying, also going to school stress’s me out don’t get me wrong what person wants to go to school I know I don’t but going to school and juggling that and being sick defiantly stress’s me out.

When I get stressed I feel like I have to load up on my medicine to just feel better. Usually when someone gets stressed out they just get a headache or are just really tired well not me. It makes my pain that I have a lot worse, it makes me sick all I want to do is sleep and not do anything. I would much rather just get stressed over something little and work past it than get stressed over something little and have to deal with it for a while because adds more on to me being sick. So be happy when you get stressed that you don’t have to deal with everything else that comes with it like I do.

Whats Next?

You would think that by now its time that they would know what’s going on with me and be able to fix it or find something to make me not in pain other than having to take medicine every day and night. Well guess what nope the doctors haven’t and gets really annoying. How do you think you would feel if it seems every other day you were sick or if you had to remember to take several different medicine’s all that time and still not knowing what is wrong or if you are ever going to be able to as I say feel normal again.

I feel like I can’t just go out and have fun with not feeling at least a little sick. Yeah I don’t feel like miserable all the time but that is thanks to the several medicine’s I take however I think everyday I feel at least a little as I say under the weather. I feel like it’s so repetitive the same old thing saying the same thing all the time and still no answers. I’m sick of being sick and feeling like crap, I’m sick of not knowing when I’m just going to hit with a sharp knife stabbing pain.

Lucky for me its almost time for another surgery as I said earlier in my posts I have to get one every three to six months and its time for another endoscopy I’m hoping that maybe they will find something this time that will give them more information because I’m just ready to stop taking all these medicines. I’m ready to just be able to feel better all I really want is just a week where I can just go without taking medicine and without feeling sick at all but I know that I cant because if I go a day without medicine I’m tired and feel even worse. I’m just ready to be normal again as I say but I guess I can say I have plenty of time to give and that’s more than some others can say.